Matt Kristensen's hair sometimes told the story of what he loved. The year he loved the Utah Jazz's Bryon Russell, he shaved his head. When it grew out, he dyed it purple, because by then he loved the whole team.

The last four years of his young life, his hair was green every winter, in honor of the Utah Grizzlies, who loved him back as their unofficial mascot and "No. 1 fan."

When Matt died in December 2002 at age 16, his folks, Mark and Roxann Kristensen, were already building his legacy. They founded Angel's Hands Foundation to raise money for research about Hunter syndrome, the rare genetic condition that killed him. But Steve Stauffer, a friend who helped them start the foundation, had a different suggestion. He'd seen the Kristensens juggle essentials like time and money to meet Matt's needs. Why not, he suggested, focus on quality of life. There was so much you had to do and pay, even with good insurance. And there are others like you.

They started helping, as they could, other families struggling with Hunter syndrome. But it didn't take them long to realize there were many other families coping with rare conditions, equally unsupported simply because they lack the numbers to form a national organization or have clout. So they started on a case-by-case basis helping them, too. As the foundation can, since it's small, it helps pay for practical things, such as equipment that insurance companies balk at buying. It has, on occasion, helped families travel outside Utah for medical treatments. While Utah's health-care system is amazing, notes Kristensen, specialists in a very rare disease may be somewhere else. And it provides comfort and pleasure, as well. Those families often defer even small vacations to pay insurance co-payments and deductibles and other expenses associated with the illness. The group helps with physical therapy that insurance won't cover or even some doctor bills. And they provide emotional support, too.

They try to get the families together for fun things about once a month. This weekend, for instance, they're teaming up with Wasatch Adaptive Sports Program for a picnic and playtime at Snowbird. They go to ballgames and Matt's beloved hockey games.

To make it work, they rely on donations. Valley fire departments host a motorcycle ride and car show, the proceeds benefitting the foundation's efforts. Utah Central Credit Union had held several annual golf tournaments to help the foundation.